Otto
Lynch Syndrome. Know your families cancer history
Please forgive me Mods for the off topic post. My hope is that you don’t delete it, however I understand if you do. I know it’s long, but I feel that the back story is pertinent to the overall message.
I was diagnosed with colon cancer in 1995, at the age of 28. The doctors were not looking for cancer, and never suspected it, after all, colon cancer is an “old persons disease” right? We had been in London for just over a year, having moved from our hometown of Burlington in 1994. We didn’t have a family doctor so once I spoke to my employer about the issues I had been having she set me up with a GP in St. Thomas where I was working. When that doctor couldn’t find anything he asked off the cuff “do you want to see a gastrointestinal surgeon?” I can tell you if I answered that question “no” then I wouldn’t be sending this message today. After a colonoscopy It was discovered that I had a fairly large tumor in my colon and it was also in my rectum. I would have to have chemotherapy, radiation and a colostomy. You could imagine the devastation. New to a city, married 6 years with a 5 year old son and a 4 year old daughter… and now cancer…. “old persons” cancer. How does this happen??
Well, given that we live right around the corner from the London Regional Cancer Centre, and I was going to be off work for a bit we decided to have all of the treatments and surgery in London. My new surgeon gave me the same opinion about my surgery, but we asked him to do everything within his power to prevent a colostomy. I was forced by my employer to take time off work for my treatment and surgery, although in hindsight, I could have worked right up to my surgery day. Radiation was no problem, and the chemo was injected through a picc line. I had no side effects from either prior to surgery. In October 1995 I had my surgery, the doctor told my wife he felt like there were angels in the room. Once the surgery was done the entire operating room let out a big cheer, No Colostomy! They ended up removing my rectum and a large section of my colon, using the bottom part of my colon to create a J-Pouch, which was intended to act like a rectum (sorry for those eating breakfast).
A few months after surgery I had to have more chemo…. This is where it got rough. I became very ill and I remember telling my wife that I could not take it anymore. She had to get the surgeon on the phone to talk me into going in for treatment. Life was not good.
Trying to find out how an otherwise perfectly healthy 28 year old can get colon cancer I was referred to the genetics department at the LRCC. With my family history it was pretty clear that this was a genetic condition. My grandmother had colon cancer twice, my mom would later get colon cancer after me, along with breast, uterine, and ovarian cancer. Her funeral was the day of the Knights first game at the JLC. They gave me a simple blood test, can compared it to tests on file from my Mom and grandmother (who knew that they kept this information from the early 80’s?). My Aunt tested negative for the gene, which meant my cousins were in the clear. My sister was also negative, but my brother carries it. Both of my children were tested at the age of 18, and they also carry the gene and have been subject to colonoscopies for every 2 years since that age. Having this gene doesn’t mean they will get cancer, it just means they are more susceptible to it and should be screened regularly. More on that later.
I was cancer free for 22 years. Until after a routine colonoscopy in June 2017 another tumor was found. This time it’s in the J-Pouch. My previous surgeon had relocated to Kingston many years before, so I had a new surgeon, no doubt about it this time I would have to have an ileostomy (complete removal of my large colon). I was OK with it. In fact, for the last 3 years I had been working for a company that specialized in ostomy products, I am very comfortable with the products and was ready to go. It was expected to be a simple operation. Go in; get the tumor, no chemo, no radiation. That day in early August however it was anything but simple. Once they got in there they discovered that the tumor was actually fused high to my sacrum, and could not be removed. The doctor performed a colostomy instead because (in his words) it is considered palliative, it was the better of the two options. When my daughter asked him “isn’t there a chance of the cancer coming back into the large colon” his response was “what does it matter” (strike one). According to the surgeon, chemo wasn’t an option, it was only going to delay the inevitable and it would severely lower my quality of life. Radiation wasn’t an option because I had had my “lifetime allotment” Basically I was a sitting duck. (BTW.. note to those posters who have wanted to tear me a new butt hole... too late!)
I researched a number of things, all of which were shot down by him. A new radiation called Cyberknife was being done in Ottawa and Hamilton. It is more precise than conventional radiation and it can be used on people who have received radiation previously. Nope, not going to work he said. How about removing the sacrum and 3D printing of a new one? it’s being done in China. Nope, not safe. He would not send me to Medical Oncology or Radiation Oncology. In his mind it would be a waste of everyone’s time. In September 2017 I asked him .. if we do nothing how much time do I have? He said 2-5 years. At that point I asked him for a second surgical opinion. I was referred to Princess Margaret Hospital in Toronto.
In the meantime I was still looking for options. I had heard about cannabis oil for cancer and I thought I would give it a try. I went to the clinic in downtown London and got a prescription for both CBD and THC oil. CBD during the day, THC at night. Figured it was worth a shot. Prior to seeing the Surgeon in Toronto I got an MRI and CT scan done, the tumor was still growing… after 3 months on the oil… so, if anyone tells you that cannabis cures cancer I can give you a first hand account… it does not. The surgeon gave me the same opinion that I got in London. Tumor could not be removed… however…. She did refer me back to radiation oncology and medical oncology in London. Both doctors were the same ones I had in 1995 when I had chemo and radiation. The radiation doctor told me that Cyberknife could be an option. I told her I was already in contact with the people in Ottawa. She said for me to wait and see what medical oncology says first but we will not close the door on this. When I saw the Medical Oncologist his first words to me were “what took you so long to see me?” He told me that for people with my genetic condition there are immunotherapy drugs that are doing amazing things. Immunotherapy attcks the gene that is causing the problems, not the tumor. Keytruda was the first drug approved in the USA that does just that. Unfortunately, in Ontario it is not covered and I would have to pay $12,000 monthly for it. My insurance would not cover it (note for those who think they have the best drug plans going… you should look into if they cover immunotherapy… I’d be surprised if it does). There was one other option. I may qualify for an immunotherapy trial back at Princess Margaret. I was referred back there.
As it turns out, this genetic condition I have has a name. Lynch Syndrome. Lynch syndrome is an autosomal dominant genetic condition that is associated with a high risk of colon cancer[1] as well as other cancers including endometrial cancer (second most common), ovary, stomach, small intestine, hepatobiliary tract, upper urinary tract, brain, and skin. The increased risk for these cancers is due to inherited mutations that impair DNA mismatch repair. (Yes… I took that of Wikipedia, it’s just a heck of a lot easier) . With the gene variant I have, the risk of colon cancer is increased by up to 80% over the general population. Lynch Syndrome affects 1 in 300 North Americans, but only 5% are diagnosed. If you hear of someone under the age of 40 who has colon cancer, chances are they have Lynch Syndrome. To put this in perspective, 9,000 people to watch a Knights game. 30 will have Lynch Syndrome, but I’m the only one in attendance who knows they have it. HF Boards has 113,700 members. 379 probably have Lynch Syndrome, but only 19 know.
You can read more about it here: Home - Lynch Syndrome International
About the only famous person I know who has Lynch Syndrome is Kansas City Royals pitcher Tim Hill: Tim Hill wins courageous battle with cancer
In December 2017 I was accepted into the trial. I began immunotherapy treatments in Late December. Every three weeks I drive to Toronto, leave the house at 4:30am, out of the hospital by 6pm and drive back to London. Every 3rd cycle I drive to Toronto two more days for a CT scan and 2 MRIs.
My March 2018 my tumor had shrunk 6.5%. When I presented this info to my surgeon in London he downplayed the results essentially calling them meaningless and said it’s not going to change anything. I fired him on the spot. I don’t need that negativity as part of my medical team. Next week I am about to have my 24th infusion. 8th cycle will be complete and It’ll be time for more scans in early May. As of my last scans the tumor was down 45.5% since December 2017. So if someone tells you that “Big Pharma” isn’t looking for cures you can throw that in their face.
The purpose of this post is twofold. 1) never be afraid to ask for a second opinion. You have every right to do so and it could save your life, and more importantly 2) Above all else, Know your family history of cancer. A simple blood test could save your life. 1 in 2 Canadians are expected to get cancer, good chance I would have got it anyway, I am actually thankful that I have Lynch Syndrome because it allows me to be more proactive with my screenings and the treatment is much much tolerable than chemotherapy. I urge everyone, Players, Coaches, management, fans to know your family history, get out in front of it and if there is a family history of any of the Lynch associated cancers get referred to a genetic doctor and don’t take no for an answer.
This will be my last post on HFBoards for a while. I need to take more time to look after myself. I’ve also deleted my facebook account. My Twitter is still open and you’ll probably still hear me as a contributor on Mike Stubbs’ show on AM980 from time to time. Mike has been a strong supporter of me in my cancer journey and I cannot thank him enough for his support and friendship.
I have included a Lynch Syndrome Awareness poster with the hopes that this circulates and teams around the OHL get involved. For anyone interested in following my current journey check the link in my profile.
Thanks for the great times HFBoards, if you hear from me again you will know that I am cancer free!
Rob
I was diagnosed with colon cancer in 1995, at the age of 28. The doctors were not looking for cancer, and never suspected it, after all, colon cancer is an “old persons disease” right? We had been in London for just over a year, having moved from our hometown of Burlington in 1994. We didn’t have a family doctor so once I spoke to my employer about the issues I had been having she set me up with a GP in St. Thomas where I was working. When that doctor couldn’t find anything he asked off the cuff “do you want to see a gastrointestinal surgeon?” I can tell you if I answered that question “no” then I wouldn’t be sending this message today. After a colonoscopy It was discovered that I had a fairly large tumor in my colon and it was also in my rectum. I would have to have chemotherapy, radiation and a colostomy. You could imagine the devastation. New to a city, married 6 years with a 5 year old son and a 4 year old daughter… and now cancer…. “old persons” cancer. How does this happen??
Well, given that we live right around the corner from the London Regional Cancer Centre, and I was going to be off work for a bit we decided to have all of the treatments and surgery in London. My new surgeon gave me the same opinion about my surgery, but we asked him to do everything within his power to prevent a colostomy. I was forced by my employer to take time off work for my treatment and surgery, although in hindsight, I could have worked right up to my surgery day. Radiation was no problem, and the chemo was injected through a picc line. I had no side effects from either prior to surgery. In October 1995 I had my surgery, the doctor told my wife he felt like there were angels in the room. Once the surgery was done the entire operating room let out a big cheer, No Colostomy! They ended up removing my rectum and a large section of my colon, using the bottom part of my colon to create a J-Pouch, which was intended to act like a rectum (sorry for those eating breakfast).
A few months after surgery I had to have more chemo…. This is where it got rough. I became very ill and I remember telling my wife that I could not take it anymore. She had to get the surgeon on the phone to talk me into going in for treatment. Life was not good.
Trying to find out how an otherwise perfectly healthy 28 year old can get colon cancer I was referred to the genetics department at the LRCC. With my family history it was pretty clear that this was a genetic condition. My grandmother had colon cancer twice, my mom would later get colon cancer after me, along with breast, uterine, and ovarian cancer. Her funeral was the day of the Knights first game at the JLC. They gave me a simple blood test, can compared it to tests on file from my Mom and grandmother (who knew that they kept this information from the early 80’s?). My Aunt tested negative for the gene, which meant my cousins were in the clear. My sister was also negative, but my brother carries it. Both of my children were tested at the age of 18, and they also carry the gene and have been subject to colonoscopies for every 2 years since that age. Having this gene doesn’t mean they will get cancer, it just means they are more susceptible to it and should be screened regularly. More on that later.
I was cancer free for 22 years. Until after a routine colonoscopy in June 2017 another tumor was found. This time it’s in the J-Pouch. My previous surgeon had relocated to Kingston many years before, so I had a new surgeon, no doubt about it this time I would have to have an ileostomy (complete removal of my large colon). I was OK with it. In fact, for the last 3 years I had been working for a company that specialized in ostomy products, I am very comfortable with the products and was ready to go. It was expected to be a simple operation. Go in; get the tumor, no chemo, no radiation. That day in early August however it was anything but simple. Once they got in there they discovered that the tumor was actually fused high to my sacrum, and could not be removed. The doctor performed a colostomy instead because (in his words) it is considered palliative, it was the better of the two options. When my daughter asked him “isn’t there a chance of the cancer coming back into the large colon” his response was “what does it matter” (strike one). According to the surgeon, chemo wasn’t an option, it was only going to delay the inevitable and it would severely lower my quality of life. Radiation wasn’t an option because I had had my “lifetime allotment” Basically I was a sitting duck. (BTW.. note to those posters who have wanted to tear me a new butt hole... too late!)
I researched a number of things, all of which were shot down by him. A new radiation called Cyberknife was being done in Ottawa and Hamilton. It is more precise than conventional radiation and it can be used on people who have received radiation previously. Nope, not going to work he said. How about removing the sacrum and 3D printing of a new one? it’s being done in China. Nope, not safe. He would not send me to Medical Oncology or Radiation Oncology. In his mind it would be a waste of everyone’s time. In September 2017 I asked him .. if we do nothing how much time do I have? He said 2-5 years. At that point I asked him for a second surgical opinion. I was referred to Princess Margaret Hospital in Toronto.
In the meantime I was still looking for options. I had heard about cannabis oil for cancer and I thought I would give it a try. I went to the clinic in downtown London and got a prescription for both CBD and THC oil. CBD during the day, THC at night. Figured it was worth a shot. Prior to seeing the Surgeon in Toronto I got an MRI and CT scan done, the tumor was still growing… after 3 months on the oil… so, if anyone tells you that cannabis cures cancer I can give you a first hand account… it does not. The surgeon gave me the same opinion that I got in London. Tumor could not be removed… however…. She did refer me back to radiation oncology and medical oncology in London. Both doctors were the same ones I had in 1995 when I had chemo and radiation. The radiation doctor told me that Cyberknife could be an option. I told her I was already in contact with the people in Ottawa. She said for me to wait and see what medical oncology says first but we will not close the door on this. When I saw the Medical Oncologist his first words to me were “what took you so long to see me?” He told me that for people with my genetic condition there are immunotherapy drugs that are doing amazing things. Immunotherapy attcks the gene that is causing the problems, not the tumor. Keytruda was the first drug approved in the USA that does just that. Unfortunately, in Ontario it is not covered and I would have to pay $12,000 monthly for it. My insurance would not cover it (note for those who think they have the best drug plans going… you should look into if they cover immunotherapy… I’d be surprised if it does). There was one other option. I may qualify for an immunotherapy trial back at Princess Margaret. I was referred back there.
As it turns out, this genetic condition I have has a name. Lynch Syndrome. Lynch syndrome is an autosomal dominant genetic condition that is associated with a high risk of colon cancer[1] as well as other cancers including endometrial cancer (second most common), ovary, stomach, small intestine, hepatobiliary tract, upper urinary tract, brain, and skin. The increased risk for these cancers is due to inherited mutations that impair DNA mismatch repair. (Yes… I took that of Wikipedia, it’s just a heck of a lot easier) . With the gene variant I have, the risk of colon cancer is increased by up to 80% over the general population. Lynch Syndrome affects 1 in 300 North Americans, but only 5% are diagnosed. If you hear of someone under the age of 40 who has colon cancer, chances are they have Lynch Syndrome. To put this in perspective, 9,000 people to watch a Knights game. 30 will have Lynch Syndrome, but I’m the only one in attendance who knows they have it. HF Boards has 113,700 members. 379 probably have Lynch Syndrome, but only 19 know.
You can read more about it here: Home - Lynch Syndrome International
About the only famous person I know who has Lynch Syndrome is Kansas City Royals pitcher Tim Hill: Tim Hill wins courageous battle with cancer
In December 2017 I was accepted into the trial. I began immunotherapy treatments in Late December. Every three weeks I drive to Toronto, leave the house at 4:30am, out of the hospital by 6pm and drive back to London. Every 3rd cycle I drive to Toronto two more days for a CT scan and 2 MRIs.
My March 2018 my tumor had shrunk 6.5%. When I presented this info to my surgeon in London he downplayed the results essentially calling them meaningless and said it’s not going to change anything. I fired him on the spot. I don’t need that negativity as part of my medical team. Next week I am about to have my 24th infusion. 8th cycle will be complete and It’ll be time for more scans in early May. As of my last scans the tumor was down 45.5% since December 2017. So if someone tells you that “Big Pharma” isn’t looking for cures you can throw that in their face.
The purpose of this post is twofold. 1) never be afraid to ask for a second opinion. You have every right to do so and it could save your life, and more importantly 2) Above all else, Know your family history of cancer. A simple blood test could save your life. 1 in 2 Canadians are expected to get cancer, good chance I would have got it anyway, I am actually thankful that I have Lynch Syndrome because it allows me to be more proactive with my screenings and the treatment is much much tolerable than chemotherapy. I urge everyone, Players, Coaches, management, fans to know your family history, get out in front of it and if there is a family history of any of the Lynch associated cancers get referred to a genetic doctor and don’t take no for an answer.
This will be my last post on HFBoards for a while. I need to take more time to look after myself. I’ve also deleted my facebook account. My Twitter is still open and you’ll probably still hear me as a contributor on Mike Stubbs’ show on AM980 from time to time. Mike has been a strong supporter of me in my cancer journey and I cannot thank him enough for his support and friendship.
I have included a Lynch Syndrome Awareness poster with the hopes that this circulates and teams around the OHL get involved. For anyone interested in following my current journey check the link in my profile.
Thanks for the great times HFBoards, if you hear from me again you will know that I am cancer free!
Rob
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